I love days like these

You know how it is when you have a kid with CP (or any other developmental delay)... you wait and wait (and work them) seemingly endlessly for them to progress. And then, just when you least expect it, things start to click and they make a step forward. With my son, it has been months since I have seen much progress at all. Sure, his head control and trunk strength has improved gradually. But seeing him do something "new"? Well, it has been a long, long time.

However, lately I have seen my boy do things I never thought he'd do again. Tonight he rolled over from his right side to his left. On purpose. Then he grabbed an electrical cord (yes, I let him do it... not plugged in) and lifted it high in the air. He worked like hell to get it in his mouth... like 15 minutes on this one task. Smacking his lips, sticking out his tongue, moving in ways I haven't seen since before the stroke. Now, he is working on rolling over again.

Yesterday morning when I got him out of bed, I neglected to sing his "Good Morning" song to him. When I put him on his changing table, he said "goouh" to me. Clearly, wanting his usual song. Lots of big smiles all around when I complied. I haven't heard a hard "g" sound since last spring. He is babbling more than he ever has. Stroke or not.

And today, he did so well in PT they brought out the cameras!

I'm just so proud of my little man. What a joy to get to be his Mommy and what a fabulous Mother's Day gift he has given me this week!

The future is now

So, when William was first diagnosed with PVL at 4 weeks old, his neurologist told me he would likely have seizures. And then after his stroke, I knew that the likelihood was even greater. Well, yep, my Man had his first known seizure last Friday. It was very short but those couple of minutes were like an eternity. I was so terrified that it wouldn't stop and he would end up in the hospital again.

But it did stop and I took him to the ER. They observed for several hours and took blood samples. Then we were sent on our way. Thank goodness.

Mister has been in a really great mood since then (crazy, I know). And his very much increased dose of Keppra (he was on a "preventative" low dose before) has decreased his retching significantly.

I'm hoping to do a good update on us all soon. Things are going well with much progress being made since his stroke.

Another Giant Step Forward

Wednesday William made another giant step forward in his recovery from the stroke. He passed a swallow study! He was able to swallow pudding and honey thicknesses with no issue and penetrated 1 out of three times with nectar.

So, for now, we are calling him safe to eat very thick foods. He is going to enjoy being able to eat chocolate pudding... the boy loves his chocolate!

We will schedule another swallow study in 4-6 more months and hope that his ability to swallow thinner liquids will have improved. I don't think we are going to get rid of his GJ tube any time soon but it will be fun for him to practice eating again!

The short version

There is no perfect way to start this all up again so I will just start with the unexpected turn that came our way this past July.

On July 29, we were still all unpacking from a week trip to the beach. I was taking the time while the kids slept in to clean the house a bit. But about 9:15 am, I realized that William was sleeping too long and I needed to get him up and get dressed for therapy. So, I went into his room singing his special wake up song but when I approached his crib, I noticed he was in an unusual position... and that he was surrounded by a huge pool of liquid. When I picked him up, he was completely ragdoll limp and I saw that he had severe nystagmus in both eyes. As I carried him into the better lighting of the den, I could tell that he was off color and couldn't tell if he was breathing. But he was hot. Really, really hot.

I prepared to take him to the ER but realized that the situation was too serious for me to drive him. So I called 911. I am surprised that the operator could get any information from me at all. Because as I type this calmly, I was completely panicked at the time. there are no words to adequately describe the fear, panic, grief I was feeling holding my son.

When the ambulance arrived, I had Margaret meet them at the door and let them in. The EMTs took one look at William (didn't even put their bags down) and scooped him up out of my arms and immediately took him to the ambulance to start medical treatment.

At the time it was looking as if William had suffered a seizure. While at the ER and after the docs had given him some anti-seizure meds, William went into respiratory arrest. He was intubated and paralyzed. They ran a CT scan on his brain but found no bleeds or trauma so everyone's best guess was a seizure brought on by a fever due to a viral infection.



William was admitted into the PICU and remained intubated for a few days. On Margaret's birthday, August 1, he was extubated but remained in a comatose state. And then. He started to have trouble maintaining his sats. And breathing. And his heart rate. My husband and I stood by his bedside and cheered for him everytime he took a breath. At the time we just didn't want him to be intubated again. We had no idea how sick he really was.

So, he started breathing again and things stabilized. Until he started showing some ominous neurological signs. His nystagmus returned but was clearly only in one direction (to his right). And even though he had been off all sedatives and most pain meds for a couple of days, he did not wake up. That is when he had a second EEG ordered and following the results another CT scan of his brain.



The CT scan showed that William's right hemisphere had sustained a huge ischemic event and was swollen accross the midline of his brain. William was quickly re-intubated. And that is when the parade of specialists started. Neurology, neurosurgery, hematology/oncology, cardiology, gastroenterology, plastic surgery, pulmonology, genetics, regular 'ole pediatric surgery, etc. MRIs of all kinds on most of his organs and major blood vessels. CT scans of his brain every day for two weeks.

He had a Nissen and G tube placed following a failed swallow study. His surgical site became infected and he nearly died from that. His stomach completely shut down following his exploritory surgery (to find the infection) so he had to have the G-tube removed and replaced by a G-J tube. He is completely j-tube fed.



William spent 55 days in the PICU. Five days on the regular peds floor. And three weeks in a Rehabilitation Center.

What caused it all? A stroke. A massive stroke that, I am told, would have killed most people instantly. The ironic thing is that William's PVL saved his life, most likely. Because William had extra "room" in his brain, it was able to swell so much without killing him. From what I am told, the stroke affected his entire right hemisphere- that none of it was spared the damage. Knowing that, he does show many of the affects you might expect. The left side of his face droops. He neglects his left arm. His vision has taken a huge hit. But then there are some things that might surprise you. He still has the same likes and dislikes. He remembers things, people, events from before his stroke. And even with half of his brain "gone", he is still himself. I can not tell you what a blessing that is.

Today, William has lost a lot of what he worked so hard to gain. But he is getting better every day. When he was released from the PICU, he no longer had any head control or much voluntary movement at all. Now, he has gained a lot of his head control back and is working on making his arms work. His left side is now very affected whereas it used to be his "good" side. He is a hard worker so I have high hopes for his recovery in time.

We still do not know why William had his stroke. And we probably never will.

Wordless Wednesday, Halloween Edition

Wordless Wednesday... a day late.

Gustav and kids update

Gustav really did put the smack down on our little city. At our house we were without power just short of two weeks which was much less time than I would have initially estimated.

And then after the lights came back on, I was thrown into trying to juggle William's full therapy schedule, getting Margaret to and from Mother's Day Out, and attempting not to let our house sink further into chaos. I've only been marginally successful. All of you other Mommies who have a full plate of therapy, a clean house, and a JOB... my hat is off to you. I really DO NOT understand how you fit it all in. That being said, I am looking forward to the day I can work again. I really miss doing something for myself. And before you ask, no I'm not planning on going back to grad school. Just not worth it in the grand scheme of my life right now. Maybe when I'm old and have time to be bored again...

How are the kids? Great!

Margaret has matured so much. I just can't believe how much of a child she is now. I miss my little baby girl! But she loves "school" and all things learning. Her creativity continues to surprise me. I just didn't realize how clever children are at this young age. Margaret loves to help me clean up little spills and dust. She is a great storyteller and can also sing decently on key. Her greatest strength continues to be her love for reading and numbers. Is she reading? A little. We don't really push it so I probably underestimate how much she actually knows. But I have to say, she is much more on par with her peers now and that makes me happy. While I loved the amazement in people's eyes when they realized that my 12 month old knew her alphabet, it is a sigh of relief to me that she is more on par with her peers now in pre-reading skills. The best thing of all is that she starting to enjoy interaction with other children... and will play with her brother from time to time. He loves it and so do I.

William has gotten huge. His 24m clothing is getting to be a bit too little for him and 2Ts are just right... he is 20 months adjusted. So, he is about 95% on the SPQD CP growth chart. While this is awesome that he is so healthy, it is really hard on my old bones. He is so hard to hold now. I'm guessing about 28 pounds and maybe 36-37 inches. But that is all ragdoll weight. When he is in my arms, he is usually completely relaxed so I get now help from him at all. And then if he gets excited for any reason and stiffens up, his weight is easier to hold, but he is so long that it is just awkward. Consequently, my carpal tunnel is keeping me up at night and my elbows hurt during the day.

Developmentally, William is still making slow steady progress. He has started to tolerate being put on the floor for a few minutes at a time now. I'm am hoping that he will learn to roll now that he has the opportunity. There are some sounds that we are calling words now. William consistently says "Addie" which means "Daddy" and he will say "Ahg" for "again" sometimes. He is trying so hard to talk but it really is exhausting for him. And it is slow going with ST right now b/c he won't stop crying during therapy. I know that given the opportunity he would be able to use a simple choice communicator to tell us what he wanted between two things. He is getting some switches for his birthday. What a lucky boy. ;)

We still have no approvals from insurance for any type of equipment for William. November 20th will mark a year since he was first measured for a seating system. Yep, that's right. I've been holding him for his entire life so far. Now we know why my elbows really hurt.